Monday, 10 February 2014

Justice for Karina Hansen

In my last few posts I've spoken about various charity work and the different projects that are happening to raise money for research as well as greater awareness of M.E. I have also spoken before about the difficulty that we face as a patient group that want to raise awareness but are limited by the very condition that we want to be made more public knowledge. We can't run marathons or climb mountains, many of us can't even leave our beds. And yet right now there is a story that is making us wish that we could fight and breaks our hearts that we cannot do more about.

That story is that of Karina Hansen, a 25 year old Danish woman with severe M.E that has been incarcerated against her will and that of her parents, whom she made power of attorney when her condition began to deteriorate. She has been confined to a mental health unit and today, February 12th, marks one year since she was admitted. Horrific does not even begin to describe the emotions that this story conjures up. Honestly it's often too upsetting to even think about, but I am making a conscious effort to share her story and do what I can through this blog to raise awareness.

She is commited there as the Danish medics that are responsible for her care, and oh how ironic that word is, believe that M.E is a psychological illness. Infact although Karina has been diagnosed with M.E by a number of experts, having developed the condition when she was 16, medics at the centre have denounced that diagnosis, saying that people that believe in the existence of M.E are "imbeciles". They have given her the diagnosis of PAWS, Pervasive Arousal Withdrawal Syndrome, which was known as PRS, Persistent Refusal Syndrome. As the name suggests the condition is characterized by a refusal to do things, refusing to do anything for yourself. Withdrawing from society, refusing to eat or talk. It is a rare psychological condition, mainly affecting children. Where they completely withdraw themselves. In that sense it can be seen why Karina or other sufferers of severe M.E that withdraw due to exhaustion, pain and hypersensitivities can be believed by psychiatrists to be experiencing PAWS. Our need to protect ourselves and avoidance of exacerbating our symptoms being misunderstood by those that don't believe in the condition. All too often M.E sufferers are branded lazy, work shy or benefit scroungers when in actuality we long to be out living full lives. A diagnosis of PAWS can mean that everytime a patient goes to protect themselves from a symptom it is taken away. For example if you request ear defenders to help block out the sounds that are making your body visibley shake it is not granted because it's seen as a method of withdrawal. Exposing the patient to more than their bodies can handle and causing more harm. This is an example that can be seen in a video I have linked to later on in the post.

Everyday Karina is subjected to Graded Excercise Therapy and Cognitive Behavioral Therapy, even though there are numerous studies that prove that GET is harmful to patients. Excercise makes us worse, due to post exertion malaise. How sufferers can even be expected to excercise when just lifting their head is a struggle is absurd. And CBT only has so much of an effect, mostly in patients with a more moderate form of the disease. Patients with severe M.E do not have the brain function for basic concentration and activity let alone trying to redirect their thoughts. Severe M.E, although again varying between patients, can mean intolerance to light, sound and touch as well as extreme fatigue, pain and post exertion malaise. At it's very worst patients cannot speak or be aware of their surroundings. I myself am at the severe end of the spectrum at the moment but it is scary to think how much worse it could be. Here is a website that you can download a copy of the severity scale from the Association for young people with M.E.  http://www.ayme.org.uk/functional-ability-scale

Holly a campaigner for Karina and one of the managers of the site Justice for Karina, wrote an article on Prohealth, which can be viewed here. In it she describes how Karina's parents when not attentively caring for her spent their time in a caravan in the garden to avoid aggravating Karina's oversensitivities. It also tells of that tragic day when Karina was taken by authorities and forcibly removed from her home by doctors and policemen. Her Mum was held back as Karina screamed for help. They searched the house taking photos and seizing all medications and supplements, trying to find evidence of abuse. And left behind only a piece of paper with when they would be in touch and when the family could contact them.

During her first day there it is known that Karina expressed that she did not want to be there, that she was scared and worried about what would happen to her. It is also known that she sent several text messages and made up to 43 phonecalls. The last of which being to the police before her battery died. She has not been allowed to charge her phone since as staff refuse to do this for her. Please read the article for more details and build up to Karina's incarcerration.

Since being in the unit Karina's condition is said to have deteriorated even more. She can no longer summon the energy to speak more than one syllable or to recognise people. And yet she is still subjected to these therapies. They simply cannot see that they are causing her more harm, even though the evidence is clear.

I think what is even more devastating is that her parents and sister are not allowed to see her. Not even at Christmas. They must feel so hopeless. They are told that Karina does not want to see them, when the truth is Karina probably has not understood what was asked and cannot summon the energy to reply. So her parents are told that she does not want to see them, which must be so awful for them to hear. I hope they are reassured that these are yet more fabrications and not the wishes of their daughter. Karina has relied on them for her care and as mentioned given them power of attorney. However since being admitted to the neurocenter the state have appointed her a guardian, that has no knowledge about Karina or M.E and he now has power of attorney. The trust that you have with those that give you care and do so much for you is paramount, and although you cannot always express your gratitude due to illness it does mean the world to you. It brings tears to my eyes to even imagine being stripped of that care and placed in the hands of people that have no belief or compassion for what you are going through. However although they cannot physically be there for her, Karina's parents are working tirelessly to grant their daughters freedom and they have the backing of the M.E community.

Justice for Karina is an organization that are desperately campaigning to try and secure Karina's release. They have discovered that by Danish law and being a member of the EU, Karina is entitled to a second opinion and Dr Nigel Speight a pediatrician and expert in M.E has offered up his services, having been involved in similar cases. Sadly he has been involved in over 30 similar cases. Speight believes that unlesss a firm and believed diagnosis of M.E is given it gives authorities room to question and go so far as to believe that the patient is being harmed, meaning that they can remove the patient from their families and put them into the care that they believe is the right form of treatment. Again completely dismissing that M.E is an illness, let alone a serious one. This has been the case with many child cases, where social services have been told to intervene due to a belief that the condition is a sign of abuse or neglect. Of course the difference with Karina's case is that she is an adult. And it is yet more complicated by the fact that both Karina and her family did everything they could to protect her rights and her health. Please watch this video, which is an interview with Dr Speight, regarding these extraordinary cases and how they come to pass.

Justice for Karina have wrote an open letter to Karina's guardian pleading for him to evaluate Karina's human rights and action this legal information, citing all laws, the existense of M.E and former cases. One of which being that of Sophia Mirza who died as a consequence of the wrong treatment. You can view this letter here.

There is also a ray of hope in that on March 19th the parliment in Denmark there will be a hearing about functional disorders and M.E will be included in this. Karina Hansen's lawyer will also be there to discuss the legal consequence of psychiatric diagnosis.

That this has been allowed to happen in this age is terrible. Especially when it seemed that both Karina and her parents took care to protect her rights as well as manage her condition as best they could. She had been diagnosed with M.E and found to be psychologically able and yet this still happened. It certainly calls for more awareness and understanding of what M.E is and the horrible effect it can have on someone's life as well as those that care for them. That way patients aren't so vulnerable to psychiatric inquisition.

This is part of the reason I started this blog, to raise awareness of M.E and everytime I recieve comments from people that say that my blog has made them aware of M.E it feels like a big achievement. There are many other bloggers out there doing the same, bravely sharing their warts and all stories to show exactly what M.E can do to you. It is a great weapon in our limited aresenal in raising awareness. It is why we are so thankful for any organizations and individuals that are raising money and spreading the word. And with films such as Voices from the shadows and Canary in a Coalmine showing the hidden side to M.E, that more people will know what it is and take it seriously.

I understand that this post may have been difficult to read, believe me it was painful to write, but I appreciate you taking the time to do so. And if you have watched the videos and read the links too, then thank you very much. That way the news about Karina is spreading and there is hope that she will be granted the second opinion.

I only hope that it is and that Karina can return to the loving care of her family. Understandibley this experience will have left an emotional scar on them all but hopefully they will be given the right kind of psychological and emotional help to help them overcome the experience. Although I wouldn't blame them if they are scared to accept any psychological help. The sooner Karina can be reunited with her family and start being cared for in a loving environment the better.

Again thank you for reading. It is greatly appreciated. Thank you also to Holly and Sami for your support in getting this post up and for campaigning vigilently. And once again for writing the prohealth article that helped form this post. You can sign a petition to help grant the 2nd opinion that is so desperately needed to help grant Karina her justice here

You can also follow the campaign's progress on Facebook or Twitter on @Justice4KarinaH or use the hashtag #J4KH. Today I will be changing my profile pictures to a sticker they have made of Karina.

Also you can read Sophia Mirza's story at http://www.sophiaandme.org.uk

Once again thank you for reading and if you can please retweet and share.

10 comments:

  1. Excellent post! Thank you so much!

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  2. With the giraffe and pilot whale killings and dear Karina, it makes me not want to go to Denmark. Crazy! Very good post!

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  3. "Dutch medics" should read "Danish medics". Different countries - not that this one (the Netherlands) is much better regarding ME/CFS.

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    1. Sincere apologies, I will rectify that now.

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  4. Since Karina was effectively forceably incarcariated in a Mental Hospital how does her treatment bode for persons with CFS or ME who wish to access Euthanasia. Since In the Netherlands, which is often in the forefront of liberal social movements, euthanasia has been practiced for some time, although its legal status was ambiguous.

    In 1984 the Dutch Supreme Court ruled voluntary euthanasia was acceptable, provided doctors followed strict guidelines. Could her treatment effectively mean that any person seeking suffering from this Disease seeking Euthanasia could be 'hospitalised' like her.


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    1. That's an interesting thought. I imagine they would be, based on the treatment shown in this case. A wish to seek euthanasia would probably be deemed evidence to be committed.

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  5. Fantastic! Shared on the Canadian FB site, GTA ME-FM-MCS Support Group.

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    1. Could you give me the link please? Thank you for sharing

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